When the dog bites, when the bee stings, when I'm feeling sad

My support group is organizing a fun event next in December.  After all the heart break of losing members this year and stress we go through, we need to let off steam.

We are organizing a group trip to the  famous (maybe just in San Francisco) Sound of Music Sing-along on December 5th.  I'm working on costumes.
What should I go as a Von Trapp child, a nun or a lonely goatherd?

Got my tumor markers, and they continue to decrease a little, which is a relief- although they'll never be at zero.  I've been on chemotherapy now for 8 rounds, over 6 months.   Frankly, I'm sick of it.  Next wednesday is my third round of Doxil.  I have a PET CT scheduled for December 15th and then I will talk to Dr. C about whether we can take a vacation from chemo.

Starting a writing class tonight, I'll post the first few pages of my story later in the week.

Auf wiedersehen

Zigzags of Treachery

I made it to my first personal training session -- I found this fantastic person -- Jane Clark, who has been helping people with cancer get some strength back.  We're working on core strength, and moving slowly, so I don't hurt myself and wind up back on the sofa.  I feel like an old lady, so week and puffy.  But I'm proud of myself for getting out there.
I've been working hard on my writing,  I'll share a chapter soon, I'd love some input, it's a mystery novel, and my hero is living with cancer.  I've been obsessively reading Dashiell Hammett.  Wow his detective fiction is the cat's pajamas!

Things are OK here in san francisco, the sun is out, and I'm trying to stay positive.
My emotions zigzag every day.
One minute you feel like a normal, average person and the next, someone at your HMO talks to you as if you're dead man walking.  A punch in the gut from a suit, as Hammett might put it.
This is a close up of one of my Egyptian collages, all those sexy hieroglyphic gals are Barbie.

Spooky Halloween Chemotherapy

Spooky.   It's Halloween every month for me.  This is actually a picture of the chemotherapy Doxil that I just got my second dose of yesterday. The color is exactly like joke blood, or Kool-Aid.

I'm feeling it today.  I'm ringy, I can't sleep, even after ingesting ambien and lorazapans.  It's how I imagine a crystal meth tweaker goes through her day.
 I'm very flushed, my whole body looks like I spent 5 hours in a steam room, I'm orange, maybe from this spooky chemo?

The good news -- my hair is creeping back on my head, with an  almost covered scalp.  Still about two months away from revealing it as my new gamine hairdo.  my neuro-apathy has subsided a little (pain and numbness in my feet and hands).

Also, the last week or so I've been feeling so much less tired.  My bone marrow must be returning to normal.  So I signed up with a personal trainer who works putting cancer survivors back together, -- I rightly feel like a hot mess.  I start on Monday.  Wish me luck.  I'll write about it after.

I'm waiting on my tumor marker tests, the CEA, CA-15, and Circulating Tumor Cells blood.  I've talked about them before, we do them every month as a loose, untrustworthy guide to what's going on in my body.

I've started writing (fiction!), so the blog's been neglected a bit, I kinda thought nobody was reading it.  But there are a few of you hearty souls out there --that really pleases me!

Have a spooky and sweet Halloween!!

Un Potluck Francais

I haven't updated the blog in a while, I've been pretty exhausted, six round of Ixempra and Zelota chemos took their toll on me physically and mentally.  First, my heart is fine and I will never submit to the MUGA test again.
Second, I decided to push for Dr. C's recommendation no matter what my local Onc. said.
It was a weird meeting with my local onc., I brought my hubby, because I have a kind of Stockholm Syndrome.  I don't trust my local doc and believe she hasn't given the best advice (these things are so fuzzy in cancer treatment).  but, I want to believe and trust her, we've been through so much together.  So, she can effortlessly plant seeds of real doubt in my mind.
I walked out of the meeting in confusion and doubting my choice to follow Dr. C's plan.  On the other hand, Ned thought she hadn't made a good case to follow her treatment plan, he was un-moved.

Amazing how we had two totally different pictures of how the meeting went down.  And more personally how I'm not in the position of strength.  I am a lawyer by training and have always been the calm, pragmatic person in a contentious meeting.  But when it's about me, I only hear about 40 percent of what's being said and then I'm swept away in a panic wave.  I hope I made the right decision, but I've gotta go with the world famous doctor.
 So now I am getting Doxil monthly, for the next three months with a scan in December to see if we're holding my disease at bay.  The drug is not as strong as the Ixempra/Zelota cocktail so I should start to feel better.  And, joy!, my hair will start to come back in.
We had to cancel a trip to paris this month, I was too exhausted go and my neurapthy was increasing -- numbness and pain in the hands and feet.  A side effect of the Ixempra.   It made me very sad to cancel, Ned and I were so looking forward to it.
To cheer us up, I threw a little French dinner party last night.  Beaucoup des fromages, vins, et Absinthe.     I baked madeleines, Ned made Coq au Vin.  C'etait superb.  Merci mes amis.

Mad Scientists and Scan results

I got my PET/CT Scan results last week and they were generally good.  My local Onc. is very happy with the results.  But I had a call with Dr. C. the IBC expert I get advice from, and he thinks we can do better.  He's more ambitious than my local onc and HMO and wants to change my chemotherapy drug for the next 3 infusions.  He made sense when we talked, and I have to tell you no other oncologist has ever treated me with as much respect as he does.  A world famous doc, who is constantly in demand.  He's also in it to win it, which is not how other onc's treat you with advanced disease.
 So now begins my negotiation to follow Dr. C's opinion.  Contrary to what you would think, my local treating onc, is not open to a specialist's advice, she often says she has no idea who he is -- let me tell you he is the most famous doctor working with inflammatory breast cancer patients and recently got a 7 million grant from the Susan Komen fund for an IBC clinic  -- it seems like a real ego reaction.  Yes, can you frackin' believe it, dear readers????  Her ego, my health.
So I need to fight for this switch.  I have to put my trust in Dr. C, he says he wants to manage my cancer like a chronic disease.   Nobody ever says this to me.  I look at his bio over and over and some of his writings.  This guy is not a mad scientist as far as I can tell.  But it's easy to be filled with doubt about who to trust.  And harder than you would think for me advocate for my own treatment.  I'm meeting my local, skeptical doc on thursday.
I have blood draw tomorrow and a heart test, to see if the chemo has damaged my hear, since I've put on so much weight.  Fun stuff.  Deep breath, exhale.

Ned's Broken Down solo show at Hatch Gallery

                                 Me and the artist (my hubby)

www.hatchgallery.org

sputnik is active

It's been a bit of a gap since my last post. I didn't forget about you, dear readers, I came down with a terrible flu between my 5th and 6th doses.  Fever, sore throat, cough and still clogged ears -- something delightfully called otitis media.  The nasty little ENT doc told me it could be 1,2 or 3 months before I get my hearing back.
 I was on the couch for almost 2 weeks.  They cleared me for pneumonia and low blood cell count, and sent me back home to get over it.  I was really sick, haven't been like that since I was a kid.  My mom came into town and helped take care of me (thanks mom) while hubby Ned worked like mad to get his solo show open last Friday.
I checked with Dr. C in philly and he recommended I take the 6th dose without delay since my blood cell count was fine.  My local onc said to put it off (of course).  I put my trust again in Dr. C and took my 6th Ixempra dose last Wednesday.
It's been so busy, mom here, my good friend Yoon from law school came into town.  She's super fun like a delectable cocktail on a summer night.  Ned's awesome opening, and, of course the neverending story of my treatment.
I've been tired and super cranky the last 2 days.  The PET CT didn't help.  I need to pull it together and feel the small joys.  Das-vi-dania!

Yield

Recovering from dose 5 of Ixempra at home.  I'm not as sick or exhausted at dose 4, which is a relief.  Last time I spent 4 days in bed with netflix watching every episode of Doc Martin -- a British dramedy.  By the end I felt like a villager of Cornwall.  I'm self paying for what's called a Circulating Tumor Cell blood test that Dr. C follows.  My HMO wont cover it.  It's a bit wonky, but they count the actual number of cancer cells in the blood to figure how active the cancer is in spreading.  The other tests the CEA and CA-15 measure serums secreted by cancer cells as they multiply.  The private lab mistakenly destroyed my blood sample and I had to go back in to give another blood draw.  frackin' annoying.  Luckily my favorite nurse David was there to do the draw.  I'm taking it slow, trying to get as much as I can from my days, walks, baking, trying new recipes, learning French.  A woman in my support group is  dying.  She's going to hospice.  She's 41, at the most.  My heart is broken for her and her family.  If I think about it too hard I go into a panic attack about my own situation.  She was also on Ixempra, but it couldn't stop her cancer.  This crap is so damned unfair.  Everything can be taken away from you fast, even if you fight like hell.  Deep breath.

Am I a Cyborg, Cylon or just a bionic woman?

I am now part machine, I alternate terms for myself, am I now bionic, a cyborg (too dated) or a cylon?  I had surgery in Interventional Radiology on Tuesday to have a port put in.  I was very scared, although it's a simple surgery where they put you into twilight, awake and aware.  My head was under a tent so I couldn't see the actual carving.  I talked with the surgeon about recessing it so it didn't bulge out of the skin, he was kinda jerky about it, but he did a good job.  I went in at 7 and left at around 1030.  The port is a plug under my skin in my left breast, which allows easy access to a major artery for chemo, blood draw and some injections.  It still hurts when they plug in, i was especially sore on Wednesday when they fired it up. On the bright side, my left arm which was so painful  from damage is feeling better, it was almost immediate, like my arm took a deep breath and exhaled the pain.  I brought my dose back up 25%, per Dr. C's instructions.  My local onc was against it, but I have to remind myself that I can't trust her, not because she has bad intentions (I hope) but she doesn't practice the same medicine as Dr. C.  I'll leave it at that for now.  I'm fatigued and achy, my legs hurt, an stiff bone pain, but I haven't needed the aid of serious painkillers. which is better than I expected.  Sorry about the lame picture along with this post, I haven't gotten back to my studio.  So any opinions?  Cyborg, Cylon or bionic?
Wikipedia
Cyborg so known as a cybernetic organism, is a being with both biological and artificial values (e.g. electronic, mechanical or robotic) parts. The term was coined in 1960 (which I like)
 Cylon are a cybernetic civilization at war with the Twelve Colonies of humanity in the Battlestar Galactica science fiction franchise, in the original 1978 and 1980 series, the 2004 reimagining, as well as the spin-off prequel series, Caprica. In the 1978 series, the Cylons is also the name of the race who created the robot Cylons. (Nerd Alert)
Bionic - Jaimie Summers,  biology + electronics.  

To Philly and Back Again

Philadelphia was hot and steamy.  And dull.  Fox Chase is in the northern suburbs, which seems to be frozen in time, but not a charming era.  So I've  posted a Paris picture -- Notre Dame Cathedral.
Dr. C was not happy with my blood and PET Scan results, only minimal improvement after 3 doses.  He was annoyed that my local doctor encouraged me to take a reduced dose of chemo again, so we are going back up to the higher one on Wednesday.  I was depressed about the lack of improvement, but I know in my heart it's working.  Now I just have to convince my cells.  He wants me back in 6 weeks, total drag.   I did get his personal email which will make communication better.  My veins have said uncle-- we can barely eek out blood from them, one is black from my elbow to hand, I feel like a Frankenstein.   I am having surgery on Tuesday and getting a port put in, defeated after 2 years of putting it off.  I was very sad about this, I'll write about it after.  My nurse swears I'll be be happier with my port than a new car, because of all the pain it will save me.

Today at the lab I had a very intense encounter.  The phlebotomist was having a hard time drawing blood since my arm is kaput, we started talking about how unfair life is.  She survived the killing fields of Cambodia.  She lost her husband, sister, mom and baby.  They took her husband out and shot him.  They took her sister and enslaved her.  We cried together as she described the fear she felt every day, the cruelty of the regime and starving as she escaped to Thailand.  Seriously, I'm weeping now as I think about our conversation.  She is one tough motherfucker.  And so am I.

Back from Paris

We had quite a wonderful trip, despite some nasty side effects from the Zeloda.  I soldiered through.
We went to england first, visited my hubby's parents.  Then on to the beautiful apartment of Colette and JP in the  St. Germain neighborhood.  MERCI Colette and JP!  We went to churches, flea markets, a visit to the city hospital, Hotel Dieu, a dog bite (two different incidents!) AMENDMENT -- one dog bite and one hospital visit only, sorry!)
rode the metro and the bus, had a cooking class in the Marais, a canal cruise and enjoyed the delights of the marches.  The Zeloda side effects hit me as soon as we got there.  Hand and Foot Syndrome it's called.  Developed an infection and had to see a doc, so we picked the hospital in the city center, thought they would speak the most English.  They did and were very kind and efficient.  My entire visit and treatment cost me 68 Euro - with no health insurance!
Paris is really a delightful city, I think better suited for adults.  When I went as a jeune fille, I was more intimidated than charmed and was dragged through all the long lines for the big sights.  We found lovely small, unique museums to visit.  It's a grand, glorious city, steeped in vintage charm, which of course LOVE.  I missed the vintage paper market because of my illness, so it's top of my list when I make it back there.

  I've had my third dose of Ixempra since we got back, and am getting my first PET/CT scan on friday to see how the chemo is working.  Then I fly to the east coast to see Dr. C.  the last thing I feel like doing.
This is us on the Canal St. Martin boat tour, a great step into the rest of Paris.  I am now, unfortunately for everyone around me, peppering my sentences with french phases, and looking forward to going back
A bientot!

Managed Care

I finally spoke with someone at the California Department of Managed care and have a state attorney on my side.  I'm going to try to get my HMO to pay for my treatment with Dr. C.  The rule is they don't have to pay for any care not at one of their facilities.  It took a lot out of me today to deal with this.  I'm miserable about not having the freedom to go where ever I want for the best care.  I'm not optimistic that we can prevail, it seems like such a racket and these big health care corporations have so much power.  How did it get like this?  How do Americans sit and take this?  Worse, cry communism when someone complains about the system.  I was disappointed when I took a good look at Obama's Health Care plan that it doesn't help me out.  It really only helps the very poor, which is a good thing, but what about the rest of us?  There must be many people like me, the under-insured.
This is the third collage in my cell series.  I finally think I was successful at using the ancient Egyptian pieces with my mid-century imagery.  Again, this is about treatment.  I'll post a better image when I get back.

je vais a paris

I leave tomorrow for my big vacation, 2 weeks in Europe, 9 days in Paris.  I can't believe I'm going.  I put the trip out of my mind to concentrate on managing my health, but it's happening!  Colette and JP have graciously lent us their flat in the 7th Arondisement.  Merci!  It gives me the chance to get to know the city and not have to rush through the sights.  I don't know how bad my side effects will be, but that reduced dose of Ixempra left me less beat up than last time.  Of course, my white blood cell count is down, so I can easily catch something traveling.  I think I will be wearing a lovely mask with a ventilator on the plane.  Yes, my friends, its a glamorous life.
This is another in the cell series of collages, this time I've gone back to my early 1950's Mademoiselle magazines.  A bientot!

Round 2 of Chemo

After a bit of a debate, I just got round two of my Ixempra IV chemotherapy yesterday.  My local oncologist recommended putting it off until after my trip to Europe next week.  It was tempting.  My consulting Onc. in Philadelphia, Dr. C advised against putting it off.  It was an impossible decision.  Since there's no cure, how do you decide?  After much stress, I decided I committed to follow Dr. C for now, and took a slightly reduced dose of Ixempra.
Like clockwork, my hair fell out almost 3 weeks to the day of my first infusion.  I have a few tiny tufts and some fringe of bangs.  But not for long.  I made the decision to go to a fancy custom wig maker today, to see what he can do for me.  Stay tuned.
This is one of my new collage pieces.  I made this one shortly after my liver biopsy, but I think is generally a reflection of my treatment.  She is from a turn 1909 Ladies Home Journal -- an Ad for her extremely uncomfortable girdle.  She looks so sad in it!  It sure doesn't make me want to order a Warner's Rust-Proof Corset.

My Liver Biopsy

When I was at Fox Chase in Philadelphia Dr. C ordered a liver biopsy.  I didn't understand what or how they executed that.  The plan was to use an ultrasound camera to guide the biopsy needle into my 2 cm liver tumor.  The doctor advised me to "take em if you got em" -- to take a bunch of atavan for the procedure since I'd not only be conscious but would have to help them move my rib cage with deep breaths to get at the my liver.  Frankly I thought my liver was lower, but we needed to get at a spot under the last two ribs.  I was nervous.  Not because I was worried it was cancer.  Dr. C told me it certainly was.  Just the procedure.  I mean, seriously, how do they get down to the organ.
Well dear readers, the answer is a really long needle.  The whole thing was mad with needles.  They used 4 different needles to numb me.  One for the skin, next the muscles, next the membrane around the liver and then the big kahuna.  I was numb but I could clearly feel the guy actually in my body, in my organ, grabbing and shaking for tissue.  I had taken 4-5 ativan for it and tried to visualize myself in a hammock in Hawaii.  I was continually complemented for how calm I was during the whole ordeal, "high as a kite" I told them.  They took 4 different samples to be certain they grabbed some of the tumor.
They were all very kind a professional, although I never got the pina colada I ordered.
I was left with a black and yellow bruise that looked like I had been kicked in the chest.  And an unshakable feeling of being violated.  A vivid physical self awareness of the layers of tissue that I would have loved to get through my life without.  I hope I articulated this well enough. The experience haunts me.  I'm making some collages about it and will post them soon.

Taking a breather

It's been a week since I started my super chemotherapy cocktail, and it definitely knocked me off my feet.  I've started Ixempra IV every three weeks and oral Zeloda pills.  I've been too tired to update the blog.  But I'm going to update every few days again.  Ugh, it was a loooong infusion.  I got a antihistamine pre-med pack and then a pepcid premed pack-- I didn't know they gave Pepcid through an IV.  Then I got my Aredia while they waited for the antihistamine to activate, finally the Ixempra.  I had my IV in at least 5 hours!   This time I got the fancy private room, otherwise we're all in a big room with windows and 10 filled recliners.  IV machines beeping off the seconds.
They stressed me out about the side effects of the drugs, I've doubled down this time. I took the advice of the Philadelphia specialist verses my local onc. and am getting twice the toxicity.  The Ixempra makes your bones hurt.  Like you have a high fever, without the fever.  I imagine it's the crackling of my bone marrow cells being fried.  The Ixempra will make my hair fall out.  I have about 2 weeks left of my mane.  The Zeloda gives you neuroapthy-- pins and needles in your hands and feet and worse.  The pictures horrified me.  And I live in fear of getting thrush, a common side effect of chemotherapy.
I've had to nap everyday since treatment started.  I hope I'll adjust, but chemotherapy is cumulative, so you get more toxic as you go on.  I'm feeling sad and overwhelmed.  But I'm still not giving up.  I'd eat live wasps in a glass shard gravy if they told me to.  Crunch, crunch, crunch.

Birthday week

It's been a very intense week and I've been exhausted.   A fantastic birthday party and then the start of chemotherapy.  Good friends came to SF to hang out.  My friend Yoon from NY, Sabrina and Megan and Chris from LA--- thanks for making the trip.  We had an extended cocktail party at the apartment and then went to Aziza a moroccan restaurant.  My mom was  the hostess of the dinner.  Thanks mom for the party.
Some friends have faded away since I got sick, while others have become bright stars in my sky.  Ned really worked hard for my birthday to be special and I love him more than ever for it.  Thanks guys.

Quick Update

Just a quick update that I've put off starting chemo until Tuesday.  I got opinions from 2 doc.s that it was ok.  I am having a birthday party dinner on Saturday with friends coming from NY and LA and the Ixempra would have made me too sick to enjoy the evening.   I'm relieved.  I really just want to enjoy my company and celebrate.  So the new start date is May 11th.  The Ixempra will most likely make me feel exhausted and worse with full body aches- -it's frying your blood cells and you feel it.  I'll be ready for it next week.  -M

The Space

After a long week of going back and forth to Philadelphia, I'm back home.  The short update is that I've decided to take Dr. C's advice and take a very aggressive chemo cocktail to get the cancer under control.  I start on Thursday.  My birthday party is on Saturday and my actual b-day is next Monday.  So I should have a head of hair through then.  After that, it's the GI Jane look again.  I'll be on Zeloda-- an oral chemo and Xempra an IV drug.  It will be intense, but Dr. C didn't recommend the less harsh options.  I'm scared, but I have a few days to "nut up" and get ready for it.  I'm glad to be spending Saturday with some very good friends.  Here's another collage I've done recently about the space between people.
More soon.

Philadelphia - the good and bad news

I'm still trying to wrap my brain around what happened in Philadelphia on last week.  It definitely did not go as I expected.  I expected to meet this bigwig, Dr. C. hear that my treatment plan is working ok and get advice on clinical trials to look out for.  Bute when Dr. C came in the room with a social worker and another Dr. I knew it was about to be turned upside down.   So you know the PET Scan I had at Dr. C's request last week, the test my HMO has never given me, it told Dr. C two things, that the cancer has spread to my liver -- I have one 2 cm tumor and that he believes the hormone therapy I am on isn't working AT ALL.  The only thing keeping my cancer from spreading is the bone medicine I get -- Aredia, and that's a piss poor one at that.  He said no one uses that anymore and the better drug is Zomeda, which my HMO doesn't prescribe.  He thinks the he hormone therapy never worked, and it's despite my current treatment plan that I'm still here.  I really didn't retain much after that.  He ordered a bunch of tests and a liver biopsy .  I'll describe that in another post, because it's such an intense experience, and yes, you are awake through it. 
We're going back to Philadelphia on Wednesday with all the results to get a new treatment plan from Dr. C.  His associate Dr. D is going to try to talk my HMO Doc into accepting it.  This isn't going to be easy.  I will likely have to start paying for my treatment myself while I fight my HMO.  A fight I've been told by other patients is almost impossible to win.  You have to try to shame the HMO into doing the right thing
At first I was devastated, there is no doubt about my liver.  They biopsied it to confirm it's the same cancer as my breast cancer.  Now I'm also furious at my HMO.
Ah, dear readers, where's the good news? you ask.  I'm not sure, but probably that I got this PET scan and put it in front of a serious oncologist.  Otherwise who knows when my HMO would have caught the infiltration to my liver.  

Test Results

  

I had my brain scan last night at the hospital.   Took quite a bit of Ativan to get through it.  They brace your head in place in a sort of Silence of the Lambs headgear with sponges, put ear plugs in and then you're backed into a small windy tunnel -- and bombarded by noise for 45 minutes. With a break to inject you with contrast dye.  They pump air through the machine, so it sounds like the tundra.  I never opened my eyes once.  I knew better.  Once you see how close you are to the ceiling, you can't catch your breath.
The good news is that there is no sign of cancer in my brain.  I was pretty worried.  I know a few women dealing with brain mets and it's terrifying to hear about.  So, pfew!  cheers!  It was worth the 45 minutes down the rabbit hole.

the journey

Sorry to have been offline for a while.  A lot is happening right now.  I just had a PET Scan today -- something my HMO generally has refused to do and am having an MRI brain scan tomorrow.  The bigger news is that I am traveling to Philadelphia to see a big shot oncologist who specializes in metastatic inflammatory breast cancer.  I don't know what to expect, but hope he has treatment and clinical trial suggestions.  I spoke to one of his patients who has a similar diagnosis as me and she can't say enough good things about him.  She also initially had my HMO and can't say enough bad things about them.  The PET scan is interesting because they inject a tracer into you-- glucose and  through that is monitors your blood flow and metabolic activity.   The big shot oncologist that I'm meeting with insisted that I have one done to be properly evaluated.  Interesting and distressing, considering my HMO has never done one on me.  This image is part of my new series of collages.  The pattern on the paper is taken from a vintage narcotic prescription drug pad.  It was literally the watermark of the prescription, and it so aptly represents the ocean of my journey.

sadness

I haven't written for a while.  I've been feeling well physically, but have been very sad and scared.  And angry.  I'm angry that I'll never be cured, angry that cancer will kill me and angry that my life has been shortened.  I'm having a hard time.  Before you say it, yes I see a therapist and yes I belong to a support group.  But they don't change the facts.  I often wake up crying, sometimes I can still get up and live the day, sometimes I can't.

The Space Between Us

This is one of my most recent collages.  I'm exploring this theme of what rests between two people.  It's made from some 1950's and 1960's gift catalogs and the bathing beauty is 1940's period.

Scan Results

Just a quick post that both my bone scan and CT scan results were stable.  I wasn't too worried, really, because I had been feeling good.  Ned and I took our first trip last week out of town since my surgery and radiation.  Just before the scans.  We went down to LA.  Spent 2 days in Venice beach and 2 in Silver lake where we lived for a year.  a great trip,  we rented beach bikes, went to galleries, saw friends, shopped and walked the  Venice canal, where ducks rule.  
It felt so good to get out of my cancer life, I can't wait for my next trip.  I've been a bit down since we've gotten home.  It's been rainy and cold.  I've been trying to exercise to improve my mood.  Made it to my gym for the time since maybe July.  I'm proud of myself.  I'll try to go again soon.  I still need some kind of mood enhancer.  

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http://www.flickr.com/photos/arenamontanus/ / CC BY 2.0
After rescheduling several times, I had my two scans today-- a bone scan and a CT Scan with contrast.  I get them every 3-4 months to monitor my disease.  Let me be honest with you, dear readers, they totally suck!  Today is the first time I scheduled them both on the same day and I think I will keep this my standard.  The bone scan is done by the nuclear medicine department - (scary, right) something they get from nuclear reactors is injected into my arm.  Then we have to wait 3 hours and then we scan.  The scan itself takes 20-30 minutes.  The worst one is the CT Scan with contrast.  First you have to drink a few liters of a barium milkshake and then when you're naked except for the gown on the table, they inject some kind of blue dye into your arm.  Except that for whatever reason, the CT techs can NEVER hit a vein.  3, 4 even a record 6 misses once left me sobbing on the table.  What I learned to do is to go see my IV nurse before and get a pick put in.  Problem solved.  Except today the bone scan nurse was supposed to leave in a pick when she did my injection and oops she forgot.  I had to go directly to my CT appointment and per usual the CT techs couldn't do it.  My veins were "rolling" or "jumping away" they complained.  I started crying out of the pain of the needles and frustration.  Finally after 4th failed attempt they got a nurse to come in.  She had to calm me down and get the pick in.  I'm exhausted and feeling pretty nuclear reactive.  Wasn't the Hulk created by exposure to radiation?  I might like that.

Cocoa Beach Party

I've been working and reworking this piece all through my radiation. I'm not happy with it but have to call it done for now. My question is, can the viewer -- that's all my lovely readers-- feel that? What does it make you think of and what are you most curious about in the collage?

Keep on Keeping on

A Deep Exhale blog reader asked me what I tell myself when I’m down or discouraged. I try to maintain hope. To paraphrase Martin Luther King – hope is the vitality that keeps life moving and gives you the courage to go on in spite of it all. This seems so true to me.

I also really love the small moments of being alive, being present, whether I spend hours watching Matchmaker Millionaire, reading or wandering through fleamarkets. I love being with my husband and our kitties. Since I got sick I noticed the fresh air tastes amazing, like a perfectly ripe fruit or peppermint tea.

Plus, crying all the time only seems to increase the burden of being seriously ill—although I’ve done my share. I try to recover and find the vitality. I tell myself over and over that I am healthy, vital and strong.

The Great Peel

This week ended with me feeling completely exhausted. I’m feeling much better than last week and every day I can do a bit more. My skin is now more sunburned pink than crimson and the great peel seems half way through.

But my mind is scattered and tired. Yesterday I withdrew from an MBA program I started on my last day of radiation. One of my dear friends who I went to law school with questioned my sanity for enrolling. All I can say is it seemed like a good idea at the time. But between my uncompleted accounting assignments and the painful team building exercises, I knew I had to put on the brakes. As you can imagine, as I was recovering B-school homework was the very last thing I wanted to do—right next to my taxes and a dental scraping. The school is one of those new “green” mba’s – people, planet, profits – but in practice it was hard to give a shit whether Wal-Mart uses energy efficient bulbs or how the carbon cap and trade market will work. The students were so enthused and I could hardly fake it. True to my overachieving self, I simultaneously signed up for some classes at City College. In art history, studio art classes and I’m debating a writing one. I really want to stay in bed for another week. I was supposed to have my scheduled scans this week—about every three months I need a bone scan and a CT scan. Yes, they’re as horrible as they sound. I can’t sugar coat it. But I so desperately need a breather from the hospital, I’ve put them off for another 2 weeks. Hopefully my sweet hubby and I can take a trip.

Yoon and the mysterious hula mug

My friend Yoon dropped by on her way back to NY. We had pizza and scotch and tried to unravel the mysterious single white hula mug Ned received in the mail with no card. Love hanging out with Yoon.

Everyone's reading Deep Exhale

After a painful and tiring week, I am feeling better. My skin has moved into a new phase I call "the Great Peel" which is an icky wet peel of the skin. It's itchy, but not keyed up nerve endings pulling at my pain receptors. I haven't hit the balance in the last few days. There's a fine line with fatigue when you're ill. Sometimes exercise is the best counter -- a good walk in the Pacifica Forest with Vanessa it leaves you feeling refreshed, or, it leaves you dog tired and puffy eyed. I often feel bone tired. But it's been a sweet relief not to go to the hospital for a few days. I have some crappy tests I need to take-- a CT Scan and a Bone Scan. I have to take them every 3 months. But I just cant face them this week. I'm too worn out for 2 injection scans. And more importantly I just don't have it together mentally if there are results I have to deal with and strategize. I need to drink at least 3 tall glasses of water before I get into bed tonight. Thanks to my kiki for warming up the keyboard for me.

Pain pills

I've been in bed the last few days, following my burn nurse's advice to take pain pills. I feel a little better today. I went down for a follow up with the nurse. She promised me that this was the worst of it and I would start to turn around- after a peel that I'm not looking forward to. I've been so tired, I've been dragging myself around the house. The pain pills help to keep you from moving around too much. At one point, I was lying on my back, hands on my belly and I couldn't move a muscle. Not out of pain, but from the sedation. I imagine that's the state junkies are furiously searching for. You don't sleep, and the craziest thoughts and scenarios flip through your mind. These painkillers actually leave me manic when they fade - astronaut wives, schools of fish, book sales, dance contests, backgammon games, brilliant ideas that evaporate with the breath.

Burnin' up for your love

Ouch. This isn't me, but it is about the color of my chest and arm. And unfortunately, my radiation onc. wasn't joking when he said it would get worse for another week or so before it gets better. My skin hurts more than it has so far, and worse is the ickiness of skin breakdown -- it gets mushy. I panicked on Sunday and tried to get a doctor on the phone. That's when you know you're really on your own. I was transferred around a circle until someone finally paged the radiation onc. on call, who I have no relationship with. The genius told me to go to the emergency room. I laughed and said I wasn't going unless I had a high fever and to please give me suggestions on what to do. I followed none of them. I hope I at least took him away from Avatar for 5 minutes. I so often wish healthcare was delivered as it is on TV. TV is the reason people are satisfied with their care. Until they get sick. It's Monday, I have a call in today to the burn nurse. I have to limit my movement because my nerve endings are amped up. every soft brush of fabric or cushion-y pad starts those endings shimmying. I spent hours in bed yesterday watching the Mary Tyler Moore Show on Hulu, instead of reading accounting. No regrets.

Owl and Turtle Cupcakes

Yummy chocolate cream owls and buttery turtles celebrating the end of my 25 day treatment and my nephew Rex's first birthday today. I've decided to continue writing about my treatment of this disease. The blog has given me an outlet to vent and to explain. I hope there's a few folks out there in the wide world who are enjoying following it. I look forward to a few day of quiet piece. Reading, working on my collages and getting things back to their proper places. When I'm under pressure, all sense of organization escapes me. A bientot!

Day 25 of 25 a deep exhale

It's taken me a few days to take a breath and update day 25, my last day of radiation treatment. I had a 730 AM appointment, It was quiet at the facility at that time. I gave up on the IPod-- returning to my reliable counting in french. I got to 130. I had my exit meeting with the doctor and nurse. My skin is breaking down, starting at the armpit. I wont go into detail, but trust me it's icky. My skin is redder than I could have imagined - a true beet red. And so sore, I am layering padding over myself after cream and then fitting on layers of shirts to keep things in place. I got this certificate - which is sweet, but I never doubted my determination to make it through. I am a tough mother fucker. After treatment and binding myself I raced to class-- almost 8 (that's eight) hours of accounting. I left an hour early, I was too itchy. Ned picked me up (a doll) I recharged and then went to a Feldenkrais class. I know, insane, but wait! then the next morning I had 8 hours of new age-y effective leadership and team building. It all felt like a laugh-- so absurd, I'll describe it in more detail another time. I've been taking notes to write about it. Finally, I collapsed at home. I was in a manic push, that faded away with a cold breeze. Leaving me feeling achy and sore and worst with a migraine. I wish I could feel the relief that its over, but it's not. Aside from the weeks of side effects, my fight continues. I have a bone scan on Friday and a CT scan next Monday. Not even a week off. But I do feel relieved that there will be no more zapping on hard table by futuristic machines.

Day 24 of 25 Almost there!

These are my celebratory chocolate covered strawberries my mom sent me, we've tried some this evening. It's a good thing tomorrow is my last day, I don't think my skin could take any more. The ladies waiting room at the facility has been so crowded that they've run out of seats at certain times. Making the experience all the more intense. Women packed together want to talk. I did have a conversation with a grandmother about to start avastin for her brain tumor. I told her my experiences with the drug. I am really crispy fried on my chest -- and my back from laser exit wounds which I didn't even notice until this weekend. I met with Dr. P, my radiation oncologist and the wound nurse for a strategy to stave off the worst of my skin "breaking down" as they call it. There is 2-4 more weeks of yuckiness to deal with. I've also decided to keep going with the blog since my battle continues on. I will be relieved to stop going to the facility every day. It's been like Groundhog Day, slogging to the facility every morning --My job seems to only be a patient. Tomorrow is a looong day-- radiation at 730 am, accounting 9am-5pm and, incredibly, a feldenkrais class at 630. I don't really think I can do all this, but that's the schedule. I'm not sure I can sit in a class for so long, I'm very uncomfortable from the burns and I wont realistically be able to keep reapplying creams every 2-4 hours. The rolling thunderstorms wont make things any easier. Still, I'm glad to have made it through this. Berry glad.

Day 23 of 25

The end of the treatment is in sight, although radiation is cumulative, so it continues to build up in the body -- side effects worsen and peak about 2 weeks after treatment is complete. I'm pretty crispy fried today, and cant wait for this to end. I need a vacation! So tired, I'm getting into bed with a book and an ambien. It's challenging to sleep while your wrapped in vasiline soaked gauze and abdominal pads. But I can do it. A Bientot.

Invitation to Comment on this Blog

OK I think I figured out how to set this so anyone can comment on my posts. I can't seem to figure out how to reveal the comments so you can read them without having to click on 'em. Technology can be frustrating, so I give up for now.

Day 21 of 25

It's been a rough day. I felt emotionally fragile and didn't handle external stress well. I had my radiation and then my infusion at another facility in the afternoon. My skin is itchy and uncomfortable no matter what I do. And I am just plain tired of going to the hospital. This is another great image of me, thanks to my Radiation Onc. A cross section -- the two half moons are my lungs with the diagram of my laser entrance and exit points. I plan on coming home tomorrow after treatment and getting back into bed. I went to my support group meeting tonight. I rarely go, but thought i needed it. And I did. A fantastic group of women. Fuck this cancer shit. I am going to keep fighting like hell.

Day 20 of 25

I was slightly disappointed to find out that Monday is MLK day and the facility will be closed. That makes my last treatment day next Thursday, the same day I start an all day program. This means I'll have to get treated at 7ish, go home get ready for my first day of class and all the social anxiety that brings and then get to market street. Class is from 9 to 515. Yes. Otherwise I went back to an older cancer centric visualisation recording for treatment, which leaves me in a daze when they pull me off the slab. My energy is pretty good though, only my skin is bothering me. My Radiation Oncologist says I look pretty good, no nasty effects that can happen. Basically your skin starts to break down. Yuck I cant imagine what that looks like. Tomorrow is an intense day, I have morning radiation and afternoon infusion at oncology of Irradia. If you don't know what an infusion is -- and I didn't before this, it's an IV. Some people put in ports for easy access. I refused and so they have to hit a vein every time. Not as easy as you might think. I've been told mine jump out of the way of the needle. Can that be possible? The chemo nurses are a sweet bunch of people who have taken very good care of me for the past year and a half. Although I have my favorite. He never misses. I hope he's there tomorrow. I usually take a few atavan to sleep through the whole experience, but the stuff looses its efficacy. So tomorrow, maybe a dvd on the laptop.

Standing image of me

The red points are the laser entrance points. It's slightly nauseating to look at for me.

Is this really me?

My Radiation Oncologist was nice enough to let me have some images from my treatment. This is a computer generated recreation of my body based on a CT SCAN. The green lines are the laser points where radiation is aimed. You can see my lungs sticking out of my torso. Pretty incredible. As I said to my Radiation Onc, it would be cooler if it wasn't me. But it is me. And seeing this image actually made me feel a little better about the treatment. Like they might actually know what their doing and their not just blasting me with radiation. Thanks Dr. P.

Day 19 of 25 - Day 18 skipped

I'm back after skipping my update yesterday (Monday). I was just too exhausted to put any thoughts together. After treatment yesterday I bought an electric blanket and got under it and that's about it. I'm feeling better today, fatigue wise. This cold weather puts a damper on my walks. My skin is getting redder and redder and itchier and itchier. I've been alternating through a variety of products-- trumeel (the holistic one), eucerin-- a creamy soother, aqaphor -- sticky, gooey petroleum product and spring wind burn cream -- from my acupuncturist-- a smelly, red cream that stains anything it touches. I also need to get benedryl pills for the itch today. I do have some amazing pix to post from my Radiation Oncologist. I'll try to do tonight, I've been a bit lazy. I'm off to my acupuncture and then my Oncologist this afternoon. Infusion on Thursday. I am going to be super tired this week. Blah. But the end of treatment is in sight-- next week. Although I'll be crispy fried by then. Tried listening to the positive affirmations today, hard to block everything out.

Day 17 of 25 - a tardy update

I've let the entire weekend go by without writing about my Friday treatment. I've been going nonstop, which has felt great and kept me from having a little pity party. Treatment itself was the usual, except I went into the Sequoia room instead of the Tahoe one. A new set of RTs. I missed mine. I hope the switch is temporary. I again listened to guided imagery. In the afternoon I met with a UCSF doc for opinions on my treatment and then had a fun dinner at Vanessa and Josh's to welcome Moshe back from Greece. Vanessa and I hit the Vintage Paper Fair on Saturday like a cyclone. Got many amazing things. Later an art opening. Then Sunday, all day at a seminar for Sustainable MBA program. I can't believe I made it through and had a great weekend. Maybe I'll post some of the paper treasures I found tomorrow. They are super cool. Baseball cards from the teens, postcards from the 40's, 1950's Mademoiselles, a very strange Milton Bradley game called Bradley's Eskimo Village from 1920. My skin is very red and needing lots of attention.

Day 16 of 25 - Armor of Battle

Feeling very tired and cranky. My treatment area is becoming very uncomfortable, part of it feels like a burn, part like a large bruise. My doctor told me this was "normal" and to take advil as well as treating the burn area. I had acupuncture today, which made me feel better. I was cranky at the facility and just wanted to get out as fast as possible. I wore my Ipod, but it didn't distract me enough. I was feeling the gravity of the situation, the weight of the armor of battle. It's really too much to process, I have to focus on my breath and try to only have clear space in my spinning mind. I've double booked myself for several things over the next week and can't seem to prioritize. After acupuncture I supprisingly had enough energy to make dinner. I have a hard time sleeping through the night now, so i take a little ambien. I thought it would be stronger, i don't see the big deal. Unless I need an elephant size dose because of all my meds.

Day 15 of 25

Ten sessions left. Today I tried to wear my Ipod again during treatment. Listening to a Belleruth Napersak's guided imagery. I turned it up real loud and laid down on the table. The RT's take it away from me, placing it somewhere I can reach over my head. Well I cant move at all anyway so if it were in reach it would still be untouchable. Imagining a special place I recalled a hill filled with tall cattails and sunflowers with a path that i used to take. It cut down behind our house on Davenport Avenue to a more populous part of the neighborhood when I was 5 or 6. I added a clearing with trim, warm grass to sit. I imagine the warm sunbeams penetrating my body, as the radiation waves do. After I met with my radiation oncologist. He kindly put together a series of images they're using to treat me and emailed me with them. They are pretty impressive.

Day 14 of 25

Definitely feeling the fatigue these last few days. The facility was buzzing today. Inside the ladies waiting room there were 5 of us, a full house. Two women were excited as it was there last day! Very jealous. We all discussed hair loss from chemo. Some handled it well, others fucked up. If they tell you your hair is going to fall out, it is going to fall out and no shampoo is going to save it. You must shave your head before the deluge, otherwise your hair coming out in clumps is too traumatic. Trust me on this. My radiation oncologist popped in to tell me we could email me copies of my x-rays for all you wonderful readers-- he's still waiting to find out if I can film my treatment. My gut says I'll be denied, but it will be revealed tomorrow. My RTs gave me good recommendations on going to Las Vegas. I couldn't find my Ipod this am-- I'm misplacing things all the time right now. It's stress-- my years of therapy tell me that. I'm going to go on a forced march around the neighborhood for some fresh air. Although I just want to close my eyes. Too tired to figure out online registration for my MBA program I start in 2 weeks-- not a great sign for future academic success.

Day 13 of 25

Lucky number 13. Today I had radiation and the dentist. I would say the dentist was worse since I hadn't been for 3 years. Plus during chemo you can't floss at all-- so that was almost a year of no flossing. Ugh. The facility was quiet today, first day back from the holiday I guess. I was taken into the Tahoe Room as soon as I changed into my gown. Today I tried to do treatment with my Ipod on. I was listening to a wellness guided imagery recording. Since I'm held entirely by the machine during treatment, I put the buds in, and the RT puts the Ipod on the machine where I can't reach it. So the settings are, well, set. I didn't put it loud enough to hear the soft voice of Belleruth Napersak (seriously) over the high pitched mechanical humming. I'll try again tomorrow. I am really feeling tired today, and I look beat. I may take a sleeping pill tonight, to ensure sleeping through the night. I still love my japanese nail art! Seriously, run, don't walk to get it.

Alameda Flea Market

Vanessa and I hit the Alameda Flea Market this Sunday and barely fit our acquisitions into the Prius. We were on a major shopping high, with all the lovely 1950's and 60's objects. I bought 2 early 60's cattail lamps, a 1940's folding cart, some 50's magazines for collage. Nessa bought two bookshelves, a cool 60's green speckled lamp, and little treasures for her film making. If I had rented a truck I would have kept buying! Ned has asked that I curb my big item collecting. Maybe I can, maybe I can't.

Alameda Flea Market

Cool Japanese Nails

As part of my reward program to myself for making it this far in radiation, I got a very fancy Japanese style manicure in Japantown called Calgel. I love, love love it. They simply will not chip. Nail art is my new favorite thing. This is a modern take on a french manicure. I moved tons of furniture yesterday at the Alameda Flea Market- see next post and these babies didn't chip!